Author: Admin

Day 74: Busy/stressful week, but fevers appear to be gone. 

It has been a while since we posted, and a busy week since we got out of the hospital. As you recall we got out of the hospital the Thursday before last because Idan went 48 hours with no fever. The day we were discharged though, his ANC was very low (in the 400’s, but it should be over 1000) and he needed a GCSF infusion to stimulate the neutrophils growth before they let us go home. The next few days were very stressful as Idan kept running warm at night before he went to bed, and we thought we would have to get admitted again. His temperatures flirted with but never quite reached the level of readmission. With the doctors’ permission, and to reduce our own stress levels, we started to wait until he was asleep to take his temperature, since they always went down once he was settled in bed. His temperature seems to be back to normal now, but we do not know what caused the fevers in the first place.

This past week was also a very busy week as we began our “Day 80” evaluations tests. This work-up is essentially a repeat of all the pre-transplant tests we did, and the purpose is to get a status report of Idan’s overall health at approximately 80 days post-transplant. On Thursday at clinic his ANC had dropped below 1000 again and they had us come in again today to recheck his ANC to make sure he did not need another GCSF shot. Luckily it was back up above 1000 so we will check it again on Monday. Still since something strange might be going on in his marrow, and in order to rule out issues we decided to move up his bone marrow aspiration and biopsy procedure (part of the Day 80 evaluation) that was scheduled for next Friday to this Tuesday. This will give us a better idea of what is going on both with his ANC and his temperatures.
Still, despite the 5 day hospital stay and the many appointments we have had, Idan has been feeling well and enjoyed the long visit he had with his grandparents. He got to enjoy many adventures between and after appointments and a lot of play time with them. He is looking forward to to his aunt (Doda Chana) visiting next weekend, and for another visit of Amanda’s sisters the weekend after.

Day 64: Just when we started to feel homesick, Idan had some surprise visitors :)

Well, it finally happened. After three months, a wave of homesickness came over me like a dark cloud last night. This hospital stay marks Idan’s fifth. It’s the third one where we are searching for a diagnosis. With every hospitalization comes the fear of not knowing what happens next, what side effects will develop, what tolerance Idan will have for the pokes and probes, and of course, the enormous amount of energy it takes to put a smile on our faces and all push forward together through the raging fire of illness. So when I took a break and went back to our Seattle apartment last night, I broke down. It all came flooding back to me the second I opened the door to the apartment. The wave of sadness at the realization that Idan, who has been looking forward to his grandparents visiting from Israel since before we even left for Seattle, is now confined to a hospital room during part or maybe all of their stay. The frustration of coming so close to getting to go home to New York, to not knowing how this set back will affect the length of our stay. The worry and exhaustion of not knowing why his fevers are persistent and sneaky, as though playing with his little heart strings. The hour Akiva and I spent pleading with Idan to take his oral meds without vomiting, trying desperately to undo and reverse the negative association with taking medications in the hospital, after finally getting him past it not so long ago. How cold and empty our apartment seemed last night without the sound of his chatter and giggles filling the rooms. It felt like hitting a wall. 

I broke down so I could put the pieces back together. Remind myself of what we are doing here, remember our strength and all we have been through since the day Idan was intubated in 2013. Piece by piece, reminding myself of all the lows, and how those very same lows led us to all the highs. Idan’s graft is excellent and he is in good health (fevers notwithstanding), and every time he gets knocked down he keeps getting up. It’s no coincidence that Idan keeps singing these lyrics from a Pink song: “You gotta get up and try, try, try, you gotta get up and try.” His resilience astounds me and gives me all the reassurance I need to get up and try. 
Today, Idan’s temperature is *hopefully* showing signs of lowering, and his C Diff appears to be in check. And just in time to really raise our spirits, a couple of surprise visitors showed up at Idan’s door this morning – two of Seattle Sounders’ soccer team players. Idan was jumping up and down with excitement! He asked them a bunch of questions (mostly about numbers – how many players on the team, what player has the highest number, you get the picture) and showed off the soccer field he randomly decided to build with his Plus-Plus yesterday. The soccer players were very sweet and found all his questions pretty amusing. Yes, we’re all starting to feel homesick, but it was a great reminder of how incredibly lucky we are to be here in Seattle and at such a great hospital.

Day 63 – Persistent Fevers:

14329953_1388297231200240_5801254640634437046_nWe have been in the hospital for 48 hours at this point and have not figured out the cause of Idan’s fevers. The first blood cultures taken Sunday night have not grown anything at this point. He spiked another higher fever this afternoon of 101.7 and they took another set of blood cultures to test. This means that we are in the hospital for another 48 hours at the very least, and with every temperature over 100.3 that clock will get reset. Idan continues to get IV antibiotics until the fevers go away, even if the cultures continue to be negative.

Sadly, the side affect of this IV antibiotic has been very loose stools and the return of C. Diff which is not very fun. So we started treating him today with Flagyl again to get rid of the C. Diff and that will continue for another 14 days. Idan is still in a good mood and mostly has had energy but the hospital life (tethered poll, frequent vitals) is starting to take a toll again. In addition, having C.Diff means that we are in contact isolation again so he loses his right to walk the hall or check out the roof garden.

Amanda and I are of course concerned that no cause has been found yet, and are hoping, like our doctor, that this is just a virus that needs to run its course. If fevers continues for two more days or if other symptoms present they will probably order more tests (like a CT and some fungal detection tests) to rule out other types of infections.

We are happy that Idan’s grandparents are here this week so they can help entertain him during the long days in the hospital. We really hope that the fever goes away for good and we can hopefully get out for the weekend, but we are not holding our breath. Hoping for better news soon! Thanks for all the good wishes!

 

Day 62: The best laid plans… Back in the hospital for a fever. 

So after our very happy post last week, we are having a bit of a set back. Last night, Idan spiked a fever of 101.3, so we had to get admitted back into the hospital for observation. One of the many precautions we take post-transplant is to take Idan’s temperature twice a day. For the last few nights, Idan has had higher temperatures in the evening, high enough on Saturday to prompt us to call the the doctors and pack our bags to go in. Each night it had climbed to 100.3 but then went back down to normal during the day. We had a feeling something was going on but it took a couple of days to present with higher fevers. On Sunday, it finally did, with a fever of 101.3. Not high for healthy folks, but alarming for transplant patients.
We were admitted to the hospital late Sunday night, and have been told to expect to stay at least 2-3 days. When we arrived late last night, they took blood cultures and CBC’s. With transplant kids they don’t wait to find out and they started him immediately on IV antibiotics while we wait a couple of days to see if his blood cultures grow anything. We do not know the cause of the fevers yet.

Now we play the 48 hour vitals game. We need to go 48 hours without spiking a fever. So if he stays below 100.3 for that long they will let us know. He last spiked a fever at 4am, so we reset the clock at that point and hope for he best. Hoping this is not anything major and just a small virus or bacterial infection that can be treated well with the IV antibiotics.

We are happy and thankful that Idan had been feeling himself and is happy, energetic and has no other symptoms. His grandparents are arriving today for a planned ten-day visit so he is excited for that and they will help entertain him.

With any luck we will get out before the weekend and Idan will be able to share his favorite Seattle spots with them.

And on the bright side, we finally got that room with a view we always wanted.

Day 57: Chimerisms are up!! Excuse us while we do another dance of joy.

The greatest joy in my life as a mom so far may just have happened a short while ago. After putting my phone down following a conversation with the clinic, Akiva and I walked into the living room to find Idan reading a book sweetly to himself. We shared with him the good news that his donor cells have continued to grow and now he has ***even more*** healthy cells than he did before. 96% donor T-cells (up from 92%), 100% donor myeloid cells, and 95% donor NK cells (up from 89%), to be exact. His facial expression went from “why are my parents acting like fools” to comprehending that he is one step closer to his dreams coming true. 
 

At the ripe old age of 4, Idan knows what it means to have Hyper IgM. He hides behind us if we are outside and children walk by. He sits down on chairs with his hands on his lap at all times so as not to touch anything. He dislikes watching videos of concerts and other activities where there are large crowds. He looks sadly at children playing – in the sand, on the grass, on the playground, in a swimming pool. He quietly asks if he’ll ever be able to go to a real school. Today, we got to tell him that, one day in the not so distant future, that will all change, and we get to really believe it. 

 

We still have a long and treacherous road ahead to make sure that Idan stays healthy and that GVHD does not develop, and we will not know for certain whether Idan is cured until we can put his new donor cells to the test. But we do know one thing that we did not know the first time around – Idan has a great graft, and his chances at a cure are looking better every single day.

Day 49: No more IV meds, and other fun updates!

14184479_1375551709141459_571277656164902772_nIt’s been an eventful few days, all in a good way. On Sunday night, we heard the wonderful news that Idan’s new cousin Lia was born! With the help of FaceTime, Idan was able to welcome Lia to the family less than an hour after she was born. It was pretty special to see Idan’s face light up as he met his cousin for the first time. We have missed too many family occasions and celebrations to count, so it was that much more meaningful to be able to share this beautiful moment with our family from the other side of the country.

And we reached a small but significant milestone today. Idan does not need to be hooked up to the IV anymore at nights! As you recall when we first got out a month ago from the hospital, we still had to hook Idan up for 10 hours at night to an IV fluid bag that contained magnesium. We have been trying for the past month to transition the IV fluids to an oral med. First, Idan had to be able to drink 50 oz of liquids during the day to show that he didn’t require additional fluids at night. Over the last few weeks, as Idan began reaching and eventually exceeding his oral intake goal of 50 oz of water each day, we have been able to gradually go down on the amount of IV fluids (from 750 ml to 180ml, then 120ml and then 60ml) and we were able to shorten the length of the infusion from 10 hours to 3 and then 2. Next, Idan had to demonstrate he was able to tolerate oral magnesium (which can be pretty harsh on the stomach). After two weeks of experimenting and pulling back when necessary, Idan is finally tolerating the oral magnesium in a high enough dose that the clinic felt we can stop the IV altogether. This is huge news for a few reasons. First, quality of life for Idan and for us. Idan never liked sleeping with a tube connected to his line, and we never enjoyed playing nurse and disconnecting the tube in the middle of the night without waking him. Second, every time we need to access his line it increases the chance of an infection. So the less going in and out, and the less we mess with his central line in general, the better (we will still need to flush both parts of the line once a day with saline and heparin). Lastly, and most importantly, this is one less thing holding us back from getting out the central line in 2 months and hopefully getting to go home to NY. We hope he continues to tolerate the oral magnesium he gets and that his levels stay high enough without the IV dose.

In other news, Idan still has a mystery cough, but it seems to be limited to the night and morning. In the last few days, it has not been as bad as it was last week, so we are hoping it is almost clear. We will see. Idan will still wear a mask in clinic until he is done with symptoms, and of course this means that Idan has added several masks to his play doctor kit 🙂

This past weekend, we had lots of fun exploring the parks in our neighborhood, which were full of surprises. On Saturday, we discovered new trails in Magneson Park that we never knew existed. On Sunday, we went to Ravenna Park, about a ten minute drive away, and it felt like we stepped into Narnia. One minute we were standing on a large lawn overlooking your typical picnic table scene, and the next minute we descended down several flights of stairs only to find ourselves standing in the middle of a beautiful lush forest surrounding a ravine (that has to be a metaphor for something, right??). Thankfully, Idan has gone from having only enough energy to walk a few minutes outside (after a month in the hospital) to trekking an entire hour around in the park (with stairs and hills and bridges) and can enjoy these wondrous new places. Amazing how, as isolated as Idan is and with everything he has endured over the last few months, he is having adventures and seeing nature in a way he would rarely be able to back in our ultra-urban enclave in NYC. We always said Seattle is a place of healing, and feel grateful every day for these beautiful surroundings.

Idan is most looking forward to his upcoming visitors. This weekend his NY grandparents will be coming out and the week after his grandparents from Israel will be visiting for 10 days. He is very excited to see everyone (as are we!!) and we hope he continues to feel well and can enjoy this time with family.

Day 44: Mystery cough:

IMG_4960Just a quick update on Idan’s strange cold symptoms. He has had a cough since the weekend. It is most pronounced at night. During the day he seems totally fine with just a few coughs here and there. Monday morning they did nasal and throat swabs for viruses and all came back negative. Monday night, he spent the whole night coughing and then was fine during the day. So on Tuesday morning we did an X-ray to make sure there wasn’t something else going on and the X-ray was clear as well.

The BMT team thinks this is probably a respiratory virus (notwithstanding the viral panel coming back negative, which only means he doesn’t have a virus they can test for), so we are in isolation until his symptoms go away. This means Idan has to wear a mask when he goes into the clinic and to the hospital for tests. The purpose of the mask is to alert other immune compromised patients to the fact that Idan has a virus of some sort and to steer clear (we have avoided people with masks and appreciate this system very much!). As it happens, Seattle is one of the few centers that does not require its immune compromised patients to wear masks all the time, only requiring it when the patient has a respiratory virus. It was not easy convincing Idan to wear the mask, which, if you’ve ever worn a mask before you would understand why. We tried to explain to him how easy he had it compared to all the other transplant kids out there who always have to wear the mask. But that logic dos not work so much for him. What did work was the epidemiological explanation of how the virus might spread, and how we do not want to get anyone else sick at clinic. I guess we need to know our audience 🙂

The BMT team thinks that this virus will either go away soon or present itself (get worse or give Idan a fever). First sign of fever we will get admitted to the hospital again for a few days, so hoping it does not come to that. Hoping it goes away and does not get any worse.

Day 40: Moving along

IMG_4908It has been 10 days since our last update and we apologize for not updating sooner. Following other people’s medical blogs I have learned that no updates is usually a good sign 🙂.

Before diving into the latest about Idan (which is all good!), we would like to give a big Mazal Tov and thank you to that very special 12 year old that organized a large toy drive for Idan for her Bat Mitzvah. We heard that she included him in her speech this past weekend and has had her whole community praying for our little boy. She is a wonderful person and we are so very honored and incredibly touched to have been included in her big day!

Things have been going well in the past week and a half. We have been keeping busy with clinic visits and building a routine for ourselves here in our temporary home in Seattle. Idan’s blood work has been doing well. He has consistently surpassed his 50oz of oral fluid intake a day and only needs to be hooked up to his IV fluids at night for 2 hours to administer his magnesium. We had hoped to switch the magnesium to an oral medication by now, but it tends to be hard on the tummy. We tried and failed last week, and we will try a different version of the oral magnesium this week with the hope that he tolerates it well and we can get off the IV. Besides that he has been doing very well with the rest of his 10 or so oral meds twice a day and has been eating well.

The trick now is to keep him healthy and safe which is not always so easy. The team feels that he is at lower risk for reactivation of some of the bad viruses as it has been 40 days already with almost no immune system and it has not happened yet. So, while still possible, the risk for CMV, EBV and Adenovirus is lower now. That said, new viruses are always scary and despite all the medications he is on we need to be vigilant in keeping his safe. Today he woke up with a slight cough and a few sneezes, so we are of course worried he is coming down with a cold, which could land us back in the hospital. So far no fever and he seems to be in good mood and high energy. Tomorrow morning we have clinic and blood work so we will talk to them then and hope for the best.

Amanda went back to work this past week from the home office we have set up for her, and I have been trying to take care of more of my work for the Hyper IgM Foundation as well. This has left Idan to enjoy a few hours a day with some new faces. He had a teacher come in once or twice a week for some school, which he absolutely loves. We have also been assigned two wonderful volunteers from Side-by-Side, a program affiliated with Children’s. Idan gets to play with them one afternoon a week and has had a lot of fun showing him all the gifts and toys he has received from all of you! We have also been very lucky to find a few babysitters in our apartment complex who can help entertain him when Amanda and I both need to get things done. One is a BMT nurse that literally lives right above us, and another is a hematology nurse that lives near by. So we feel pretty good about Idan spending time with them, as he has been teaching them the proper way to do a central line dressing change on his Piggy and how to do transplant on his puppy, Blue 🙂

Day 30: A very good sign.

We tested Idan’s chimerism on Monday and received very good news. As a reminder, chimerism is the percentage of Idan’s new cells that belong to his donor versus his own defective immune system making a return. The results came back showing that a whopping 92% of his new T-Cells are donor t-cells, all of his myeloid cells are donor myeloid cells and 89% of his NK cells are donor NK cells. Translation: according to these initial results (which may change over the next few months), the transplant appears to have worked! A cure is in sight!!!
We have spent the last 24 hours in a bit of a haze. It is difficult to rejoice knowing what challenges lie ahead (viruses, infections, GVHD), each of which can turn back the clock, or worse. But for the first time in a very long time, we are enjoying the luxury of hope. For the past three years, “hope” had become a four-letter word. Each time it reared its head, our hearts would be crushed soon thereafter. But unlike Idan’s last transplant, with a starting point of only a tiny T-Cell graft (7% at first) that we tried everything we could to salvage, we are coming out of this transplant with a very strong graft, and a very healthy child. We have real cause to hope that a cure is indeed in sight.
We also received some very sad news yesterday. We learned of the passing of a 4 yr old boy with Hyper IgM who had his transplant in Argentina only a few weeks before Idan. We had been following his story and talking to his mother about the complications that came up post transplant. He died from a vicious virus that snuck up on him after he was released from the hospital. Our thoughts and prayers are with this family as they grieve this tremendous and unspeakable loss. Sadly, this little boy is the third Hyper IgM child in just a few months to die from complications after a bone marrow transplant, which is the only known cure for this disease. For a disease that affects only 1 in 1,000,000 boys, 3 is an alarming number of deaths. It is also a very painful and unwelcome reminder that the first year after transplant is a treacherous road, with very real dangers that can happen at anytime. We will continue to raise awareness for Hyper IgM with the hope to accelerate a safer and better cure for Hyper IgM than the risky stem cell transplants that has taken so much from these families.
As always we thank you for being part of Idan’s army and part of a movement to continue to fight for all of these precious boys so that transplant is not the only option for a cure.

 

Day 24 – Building a Routine:

It is definitely good to be out of the hospital and back at our temporary home here in Seattle. Idan has spent the last few days enjoying his freedom from the tethered IV pole and the frequent vital checks he had in the hospital. He has been getting a lot better at taking his oral meds and is very close to meeting his daily oral liquid intake goal of 50 oz. Amanda and I still have to hook him up at night to an IV pump that gives him extra fluids and magnesium and then unhook him and flush his central lines in the morning. We are all looking forward to the day we can switch over to oral intake of magnesium and not have to do any nighttime IV fluids. Idan has told us that he plan for clinic Monday is to ask the doctors about this 🙂

We are on a twice a week blood test and clinic schedule, which ends up always leading to more visits as things come up from these tests. Today, for example, we were supposed to only have a blood draw at 7:30 a.m., and then Idan enjoyed a well-deserved freshly baked Top Pot doughnut in the Marina/Lake Union area. Just as we were heading home we got a call from the clinic that the results from his morning blood draw showed that his ANC dropped down to 1000 (it has been trending down for a few days). So we made a U-turn and headed back to the clinic for Idan to get a G-CSF shot. This shot will help stimulate growth in his bone marrow and hopefully get it to trend back up again. This is quite normal at this stage and not anything they are worried about. Idan, being the trooper he is, did not even flinch during the shot in his arm, and we were back out again in no time heading back to play more doctor at home.

The last few days have been very fun for Idan, with his Uncle Yitzi visiting for a couple of day and joining us on all our adventures and today with the arrival of two of his aunts for the weekend. On Thursday we took advantage of the good weather and went out to Discovery Park for Idan to see the beach and light house. We try to find places that are not crowded and don’t present other risks for his very week, almost non existent immune system.

As always we are very thankful to all the support Idan’s army has shown us in the past few weeks. Today, Idan came back from his unexpected shot at the clinic to a big surprise in the form of two large boxes from Amanda’s co-workers at Sheppard Mullin back in NYC. These thoughtful toys and activities (and some pampering items for us) will keep him busy and us sane during the long days ahead.

We are checking Idan’s chimerism next week, which will tell us whether he has engrafted with donor cells or not (the best measure of the transplant’s success). We expect results by Thursday or so. We will keep you all posted!

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